Opinion: Informed consent does not meet our ultra-modern moment

Philosopher Bertrand Russell wrote, “Unlike religion, [science] is ethically neutral: it assures men that they can perform wonders, but does not tell them what wonders to perform. In this way, it is incomplete.” I am not smart enough to decipher Russell’s faith so I understand this statement to reflect the need for our scientific institutions to have a framework for the ethical performance of their primary function — that of enhancing our lives through the development and deployment of well-researched technology.

Within the institution of medicine, this framework rests on the principles of autonomy (patients are free to make their own choices), beneficence (doctors are obligated to help patients), non-maleficence (doctors are obligated not to harm patients) and justice (resources should be distributed fairly). Ideally, a balance is struck among these conflicting principles that delivers the greatest benefit. A culture that increasingly views all exchanges as transactional paired with an ever-expanding physician-patient knowledge gap have distorted autonomy in a way that paradoxically limits the most vulnerable in exercising their capacity for self-determination. An example at the extremes illustrates this point.

In his recent article in the Atlantic, author David Brooks explores the perils of unfettered autonomy in the context of physician-assisted suicide in Canada and presents some staggering statistics. In 2021, more than 10,000 Canadians died by physician-assisted suicide and only 4% of applicants were denied this service. Some who sought and/or received physician-assisted suicide did not have terminal disease and there were even reported cases of patients citing poverty or homelessness as their reason for seeking suicide.

Such unsavory circumstances should serve as a cautionary tale to those who would codify into law autonomy as our highest value at the expense of other principles such as our responsibility to care for the vulnerable and the sanctity of human life. As Brooks notes, the result is the reduction of an ethically complex situation to an administrative function that lacks nuance to a degree that would make many uncomfortable.

Instead of tightening eligibility, Canadian lawmakers intend to expand physician-assisted suicide for the mentally ill and maybe even minors in some cases. I would be surprised to learn that informed consent, in the technical sense, was not obtained from every patient who received physician-assisted suicide in Canada in 2021.

One only needs to tour a local medical ward or ICU to witness this dilemma play out in a more mundane but equally pernicious way. Patients with advanced chronic disease are often subjected to a laundry list of procedures and medicines by a well-intentioned but often fragmented medical team. Conversations regarding more conservative approaches seldom take place without the enlistment of a palliative care specialist.

Looming in the background is often the pervasive fear of litigation by patients who did not have “everything done.” Ironically, there is good evidence that patients do not sue providers with whom they have positive and collaborative relationships; the sort that evolve from conversations about personal values and can facilitate truly informed consent.

The freedom to choose among complex options, the consequences of which may require at least postgraduate education to fully understand, does not represent true autonomy for the most vulnerable members of our community. A literal interpretation of informed consent in this context results in something like a hostage situation that deprives patients of physician expertise.

Creating an expectation that practitioners of all specialties be caregivers and stewards in addition to providers of professional services could move the needle in the right direction. Value-based incentive programs in the managed care world have attempted to get at this but too often entrepreneurship and administrative box-checking degrade the spirit of regulatory policy and incentive structures to workflows, efficiencies and, in the worst cases, something akin to fraud.

In a time of much hand-wringing about the downstream effects of developing technologies, medical education that prioritizes the humanities on par with technical skill may offer the best chance for rebalancing the ethical framework of medical decision-making in a way that equally respects the dignity of all patients.

Michael Layne M.D. of Norfolk is a family physician and medical director of Ghent Family Medicine at Eastern Virginia Medical School.